Help us evaluate conferences from the patient/caregiver perspective. SURVEY NOW on PAN WEBSITE

[A Former User]

Good info, thanks. So of this can go into our end of year report too. Alies

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[A Former User]

For eHealth I have some answers to how the patients will be chosen, at least a lot of it. They will ask people to apply starting on Feb 9, and will ask for the answers to 3 question - Colleen McGavin and I worked together on the questions. Our starting point was the same Q's that Infoway used for the Partners Ponference.

It should not be too onerous because each answer can only be 100 words. The questions are about digital health.

I was being very conscious of potential conflict when I said that I would be part of the first 2 phases of the judging, but not the final one. However that seemed to leave just Colleen and one of the sponsors, so I volunteered to stay to the end of the judging.

When I judged for Infoway 2 years ago I had suggestions for the future. The ranking depended a lot on who did the judging - it might have been better with one more step. However I have no knowledge of how it went last year.

[A Former User]

Virginia, I like your idea about linking up with the Patients Included folks. I don't know any of them - do you have any ideas? Alies

[A Former User]

Our member Kimberley S is involved with Patients Included,

[A Former User]

Thanks everyone for the great feedback!! Wow!

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[A Former User]

I have heard that one conference gave buttons to each patient and caregiver attending so that they could identify each other. Can't remember the name of the conference, but what a great idea!

[A Former User]

I wasn't able to attend this year's Quality Forum in Vancouver. However, here's what they did to help out patient partners who were there.

They offered buttons to self-identify as patients. They hosted a breakfast meeting for patients to meet each other at the start of the conference. Fantastic to get acquainted before the confusion, intensity and rushing around gets going. Those who attended might offer more from their experiences at #QF18.

The Quality Forum is **Patients Included** thanks to the effort and investment of the organizers: the BC Patient Safety and Quality Council. Many of the plenary and a few breakout sessions were live streamed. I'm hoping to watch the videos when they are posted on the website.

Cheers, Carolyn

[A Former User]

I should add that the patient breakfast included the keynote speaker and great patient innovator from the UK, Tim Omer, also of #WeAreNotWaiting. How terrific to bring everyone together.

[A Former User]

Stanford MedicineX (back in the Patients Included, pre-Everyone Included era) used to have different coloured name tags for the ePatient Scholars (patients and caregivers).

The gold ePatient tags also provided access to a special patient seating area at the front of the Plenary Hall, and a separate VIP room for meals. Sitting together, eating together, and being able to find one another easily by way of the tags was super helpful.

[A Former User]

What great information, Kerri! I think we can include these as suggestions when we write the report at the end of the year. It would be so great to get organizers to think about some of these "best" practices. Alies

[A Former User]

Perhaps both pins and ribbons could be optional for patients, caregivers and members of the public. I am not sure only scholarship patients should be signalled out as there may be paying patients there too.

I agree about the "please stand" request especially if we are the only group to do so. It seems a bit like show and tell -- see how great we are to have permitted patients to attend!

[A Former User]

Like any form of feedback you start with the end in mind. What was the goal of this conference and was it achieved? What value did participants feel they gained through attendance. The questions address factual information for the most part.

I personally like to see questions that address the value patients felt in being present. What was for you the highlight of the conference? What suggestions would like to give the organizers for future conferences? Would you recommend this conference to friends/cohorts. Why?

Lorraine Bayliss

[A Former User]

Hello

I like the idea of pins but I think this is something I would check with patients if they okay with it.

The October conference I am speaking at I will request to welcome the scholarship patients, a breakfast for us to meet prior is a great idea. I then can invite them to have lunch with me too. No one likes to eat alone. I may suggest we attach a subtle ribbon to the patient scholarship name tags. The conference is allowing me to take lead on this so I appreciate all the great ideas.

The conference I attended as a patient we were asked to stand during the closing words. I was set back by this request, not that I minded, I just wish I was given heads up.

[A Former User]

Alies, Where is the final version of this survey to be filled out? I attended the Choosing Wisely Canada National meeting and could fill one out for that...

Thanks, Susan

[A Former User]

Susan, it is on the PAN public site home page www.patientadvisors.ca. I will be filling out one myself as today is my last day at the CAHSPR conference. Thanks for doing this. We are getting a good number of responses to this. Cheers! Alies

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[A Former User]

Thanks. Yes, I did find it and filled out one. Have also tweeted. Thanks.

[A Former User]

I am wondering where i might find survey results and some of the suggestions related to supporting patients at conferences., I am part of a team determining the the scholarship process and ways to better support Patient participants at the conference. There were several great ideas in the string above and i am curious if they are listed anywhere. ?? would love to adapt learnings of others....

Donna

[A Former User]

Hi Donna,

We're a bit bogged down in getting our results out --and you are so right that it is valuable information to help conferences get it right! Can I put you in touch with our project team that's analyzing and writing?

If I may add... as it true undoubtedly for you and so many other members, getting overloaded seems to come with the territory of patient activism in partnerships. The opportunities are coming fast and furiously. We are already in the midst of the conference "season".

Trying to find time for PAN infrastructure, as well, has become challenging. So apologies for the delay. I'll be meeting you soon in person in Halifax --can't wait!

Best regards, Carolyn

[A Former User]

HiCarolyn- apologies for delay- missed your reply.. I have been in touch with the team and received helpful feedback.

excited to connect with you in Halifax- looks like a great conference as well.

Donna

[A Former User]

I’m available to share conference pressures. Retired Health Sciences professor with a toxicology research background. Seasoned vet as a patient (particularly cancer, and as a caregiver (particularly cardiovascular and cancer). Got the interest and the time. Count me in.